As Our Future Health promotes itself ever more loudly and ever less clearly, this is medConfidential’s current view on the project, the commercial company that lurks within a charity, and promotes itself using the NHS logo. While our view may change as new information becomes available, we are concerned about the transparency and integrity of current public communications from Our Future Health Trading Ltd, and the scope for future changes.
If you don’t want to be involved, you don’t have to be, and you can just ignore Our Future Health (OFH) and any communications it sends. If you have already given them a DNA sample, you can tell them to destroy the DNA they collected from you using the multiple step process that begins on this page – do the “partial withdrawal” online, then email firstname.lastname@example.org and state you wish to a “full withdrawal”.
If you have (or even if you don’t have) questions about the transparency and integrity of OFH statements, we observe that their FAQ entry entitled “How can I leave the programme?” does not include the above link to the page that tells you how to leave their programme…
Whether you sign up or not is entirely a decision for you and your loved ones – handing over your DNA and NHS medical history to a commercial company to sell has consequences on those biologically related to you, and as OFH expands to access other government data about you, it will include information on those you live with, both now and in the past.
The UK has a non-commercial Biobank with clear governance, whereas OFH exists to help “kick start” the life sciences industry with a company selling access to data and a charity doing marketing and publicity for the company.
There is a historical analogy. In the 1990s, there were two competing “genome projects”: the Human Genome Project was supported by the public purse and committed to public knowledge; a private competitor – the ‘Venterpillar’ – tried to privatise the lot, and went bust. Sir John Bell helped the Human Genome Project succeed, but switched sides to capitalise on the “life sciences strategy” he wrote.
Shortly after they were not mentioned in the “growth package”, OFH’s communications suddenly changed to highlight they had now half a million volunteers… What does “volunteers” mean? Why did the count of “appointments where they give a blood sample primarily for DNA analysis” largely disappear?
[This page was updated in June 2023 after the CEO resigned. A link to the opt out form was added in August, and a line was added in October 2023 when OFH started sending junk mail letters under an NHS logo, some of which offered a £10 shopping voucher (others did not). In December 2023 we added a line about risk scores. We will update the page again as new information becomes available.]
The viability of the commercial company is unclear
Our Future Health has sent out around 10-12 million letters, and claim they have achieved half a million “volunteers”. At that signup rate, they cannot achieve the five million signups from the remaining population as required by their business plan. The consequences of this are unclear.
If you have a National Data Opt Out, you will not receive a letter addressed to you inviting you to sign up. You will still see all the adverts and the press coverage, and members of your family can still sign up and give a DNA sample which will relate to you as all DNA samples do. medConfidential understands (as of summer 2023) that OFH has not yet received approval to access NHS patient data, only to have addresses provided to a third party to invite people to sign up. In addition, OFH may also buy junk mail lists which contain your address, and may then send you a “Dear residents” letter as a result – this will not be addressed to you personally as they have no idea who the recipients are, only that an address might exist.
In 2024, OFH is wanting to create a ‘health risk score’ and place the burden on your GP to explain it to you. Replicating the decline of Zoe and other influencers towards selling “food supplements”, all of the incentives on OFH are to maximise that score while minimising their help and blaming the NHS for not doing more. Your doctor has professional obligations to you; OFH does not.
Here are our outstanding questions about Our Future Health which we don’t currently have reassuring (or, in some cases, any) answers to.
Questions For Individuals…
…about the signup process
- Which organisations have reviewed the current signup process and language for accuracy and transparency and to see whether it is misleading about (not) being an NHS project (which it isn’t)?
- If you don’t complete the process, at what stage does Our Future Health count you as a “volunteer” – the first time you click the first link? Is that inflating the “volunteer” count?
- Why doesn’t Our Future Health confirm that no data you provide will be used to help your care directly? (Something may be found that is eventually used to help everyone with that condition, but it does not come back to you directly.) Why does some marketing material suggest that ‘OFH will help your health’?
- OFH does not currently offer rewards or incentives to sign up. Is this being changed? To be targeted at particular subgroups?
… about data
On the NHS confederation podcast, the new CEO of Our Future Health said:
“in the future, what we’d like to do is take consent to link to other records that the Government, and the Office of National Statistics for example, collect through the census, and other administrative databases”.
- Will any NHS body review requests for NHS data by projects approved by OFH?
- What data are currently proposed to be linked? How can that process change?
- What data are being discussed for linkage in future? What choices will be offered to about inclusion?
- Specifically, are there discussions to link to data that “Government” holds about children’s education history from pre-school to post-education employment?
- What plans are there to link to DWP’s (benefits/pension) data?
- Will staff from DfE / DWP / etc have access to the data on the same terms as others?
- Do you know how consent for inclusion in the dataset can be withdrawn? What happens to data / samples held by OFH? Will they be destroyed?
Questions for Our Future Health
… about process
- When did OFH last confirm that all of what they told IGARD and CAG previously remains accurate? Are they willing to publish those documents? (our FOI hasn’t come back yet)
- Why did the CEO resign so abruptly in June 2023? Was it related to the sudden change in public communications around the same time?
- When Our Future Health says “we will publish a list and summary of all approved studies on our website”, why is that less transparent and contains less detail than NHS England?
- We include more quotes from the new CEO’s appearance on a podcast below, but how many of those “future” promises are delivered today?
… about business models
- Can the company be sold to benefit the charity? (Just as Wellcome PLC was sold to benefit the Wellcome Trust, or as ancestry.com was bought by private equity…)
- When the company runs out of cash and goes bust, which it probably will, what happens to the data? Who can buy the DNA records and other assets in a firesale? [December 2023: the £51m of public funds announced in the November budget should help with that]
- Just as OFH is company owned by a charity, so was the creator of orkambi, who made decisions for the charity which proved extremely expensive to the NHS. Will any OFH success come at at the expense of NHS budgets?
Questions for public bodies
- If there is a discovery that can improve the nation’s health, will Our Future Health (“charity”) keep it secret for profit, or it will become available on the NHS for everyone?
- OFH is writing to everyone in the country; the vast majority are not signing up. Will OFH and associated projects be able to receive data on people who didn’t sign up using other methods?
- OFH lauds the supportive comments they hear from stakeholders; are all stakeholders kept fully informed of changes to OFH since they gave that support? Have you been?
- In light of the “broad consent” question / debacle with the vaccine taskforce, what happens if the “informed consent” that OFH collects turns out to be invalid?
- What possibilities has OFH discussed for expanding data linkage to other areas of Government, such as DWP or DfE? Will an NHS body be expected to review all or any projects using NHS data?
- Given the approach being taken by OFH, what are the consequences for similar data linkage in the rest of Government and ADRUK/HDRUK?
- The Government’s “Data Protection and Digital Information Bill” (our briefing) removes penalties for misuse of data that is said to be “anonymous”, even if it isn’t. What are the consequences of that Bill on OFH’s customers and the promises it makes to “volunteers”?
- Sir John Bell, founder and prime mover behind Our Future Health, got his CH recently. What questions would the Palace ask before William/George would sign up? What are the answers? Why isn’t that information available to everyone?
It does not seem unfair to describe Our Future Health as two steps away from offering a chocolate bar in return for DNA and lifetime data access. [October 2023 update: OFH is now offering some people – but not all – a £10 shopping voucher in return for their DNA and lifetime data access.]
As part of Our Future Health’s publicity push, they appeared on the NHS Confederation podcast to promote themselves. Strangely, the new CEO didn’t mention that he was about to get that job, and instead said:
“…what it [UK Biobank] didn’t do was to allow individual level feedback to participants or volunteers in the study and see what action they could take themselves to prevent those diseases. That’s what we’re trying to do with Our Future Health now. It’s a successor study to UK Biobank, those who take part will have the opportunity to get individual disease level feedback in the future…”
“As of today, we have 500,000 people have signed up… and about 200,000 have attended appointments where they give a blood sample primarily for DNA analysis, and also have some physical measurements taken…”
“…in the future, what we’d like to do is take consent to link to other records that the Government, and the Office of National Statistics for example, collect through the census, and other administrative databases…”
“We’re not just giving people information that cannot be acted upon, as that’s not good for them, neither physical nor mental health. Initially, we’ll feedback information on disease where there are existing programmes for them to be dealt with, so for example, diabetes, ischaemic heart disease, heart disease, we have the existing NHS health check programme for people aged 40-74. What the additional information will gather through OFH is people will have more accurate information about their disease which can be dealt with when they go for their health check. Additionally, diseases like breast cancer, where we have a screening programme, being able to identify women who are at higher risk of breast cancer based on their genetic risk who are not identified, so who are not part of the screening programme, that will have to be done in close coordination with the NHS screening programmes as well. The whole programme is being done in partnership with the NHS, but its implementation, once the research phase is over, the implementation phase is a key challenge which we are aware of.”
Shortly after this page was first published, this FOI response came back:
- CAG Application April 2023 ADDITIONAL INFORMATION.pdf
- CAG response regarding letter variant testing May 2023 FINAL.pdf
- CAG-Amendment-Application April 2023_FINAL1 redacted_Redacted.pdf
- CAGSF6-Annual-review-April 2023 – FINAL_Redacted.pdf
- Response to questions raised by CAG Amendment Application April 2023.pdf
- 22CAG0051 CAG Amendment request Jan 2023_Redacted.pdf
- CAG 22AG0051 Our Future Health Amendment Application 9-11-22_Redacted.pdf
- CAG Amendment Application ADDENDUM on opt out and PPIE Feb 2023.pdf
- CAG response from Our Future Health 07032023.pdf
- CAG-Interim Amendment Application March 2023_Redacted.pdf
- NHS Digitrials invitation_V3.2_tracked.pdf
- [CLEAN] 3 Protocol V4.0 FINAL_15DEC2022_Redacted.pdf
- clarification on proportions_Redacted.pdf
- 22CAG0051 CAGSF1 CAT advice form OFH _FINAL.pdf
- 4372 OFH – Consent Form_June_print_Redacted.pdf
- Appendices 1-5 OFH Comm plan.pdf
- Appendix 7_Detailed Data Production Flow 1.1.pdf
- Data Protection Registration_Z8959110.pdf
- OFH – Ethics_Governance_Letter of Support_Redacted.pdf
- Protocol v3.2 _Redacted.pdf